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Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 022708

My father has recently been diagnosed with Parkinson's Disease.   We are experiencing some troubled times with him.  He has become extremely irritable, has temper tantrums, and refuses to eat with us at meal time.

I was not aware that people with Parkinson's had this type of behavior.  Do you have any suggestions to get him to be more cooperative?

View Comments


name: David Gillaspie
location: Oregon
Email: deg86@comcast.net
Date: 27 Feb 2008

Comments

On one hand, a woman came to visit once who knew my father in law Grandpa Ken had Parkinson's. I'd been GK's home caregiver for years at the time. She took one look at him stretched out in his lift chair and ran downstairs crying. Her husband had just been diagnosed with PD. On the other hand GK's doctors and therapists were amazed at his incredible health. Lacking Parkinson's and dementia, GK seemed fit as the proverbial fiddle. The reason for his smooth transition with PD was his strict regime of meds. He got his pills on time every day. Sometimes my mother in law had them ready a half hour early. GK had gone through some falling before his PD diagnosis, then a time of chest pounding convulsions that scared the heck out of everyone. That was before I was doing the caregiving. He went through a ton of tests and had a med schedule ironed out when I got him; he was maxed out on all of his meds. He couldn't take more sinemet. He was on his end of life dose of everything, then things took a turn for the better and he lived another five years under strict, on time, scheduling. My point is that the meds are key. GK went to the hospital for an overnighter after a fall; they didn't get his meds on time and he bottomed out. Assign the duty of 'med time nag.' Google PD and depression and take a few ideas with you to your dad's next doctor visit. Recent studies cite an overly medicated population in nursing homes. I have a feeling the researchers weren't caregivers. GK's meds were altered by a nurse practitioner when he decided the PD was actually Progessive Supra-Nuclear Palsey. Right there the nurse practitioner changed the amounts. By the next day GK was falling apart, weaker, drowsy. I decided to return to the regular amounts in the afternoon and by evening he'd perked up. Again, the meds make a dramatic difference. It's Parkinson's, it's a long ride, and it's a family affair. At worst you'll be a constant in your dad's life. At best your dad will show a humanness beyond what you imagined possible and you will be a part of it. Search for Wrestling with Care, it is my Parkinson's caregiver story.


name: Sally
location:
Email: carlheir@comcast.net
Date: 27 Feb 2008

Comments

I would say "amen" to the previous writer's comments about the meds. Parkinson's dementia can be debilitating for everyone and we had a roller coaster ride you don't want to hear about before my father was correctly diagnosed and the medications began to help. Try to find a doctor who specializes in PD-- most don't have the understanding you need. PD is not Alzheimer's-- my father was angry because of the effects of the disease-- he was always 'with it' and knew what was going on. Without meds, he became a social recluse and was paranoid. With meds, he returned to himself. Good luck.


name: Jenn Molnar
location: Vero Beach, FL
Email: simpleone30@yahoo.com
Date: 28 Feb 2008

Comments

First is your father taking any anti-depressants or seen a psychiatrist? Right after my husband was diagnosed, he laid on our couch literally for a year to a year and a half waiting for God to come get him. He refused to participate in life or his children's lives (he was 36 when diagnosed and our youngest was 6yo). He was so depressed over the fact that he had the disease and that it wasn't something he could take a pill and cure. Not to mention the physical hardships it placed on him that caused frustration. Also, I ask this because it is becoming more accepted that as PD ravages the dopamine in their brains, it can cause these types of ailments. My husband turned out to be bi-polar. Now that he is medicated for the bi-polar and has the right PD meds, he is back to his wonderful, participating self. I would also like to know what side effects his medications have. My husband started on Mirapex and could not tolerate the side effects, thus it aggravated him and caused bad behavior. Could it be a side effect of the meds or his irritation with side effects? PD, also, causes dementia and that needs to be treated if he is suffering from it because it will cause that behavior too. Finally, just make sure there isn't another illness causing these behaviors. Sometimes doctors are so focused on the disease, (especially the specialist we take our loved ones to see just for this disease) they aren't trained or don't look for other disease or reasons. Good luck, hang in there and know that you have lots of support from other caregivers who have been in your shoes. You are a good person just for not giving up on him and still trying to find answers for him!


name: Diana Perez-Moreno
location: San Marcos, Texas
Email: dmoreno66@hotmail.com
Date: 28 Feb 2008

Comments

My mother was diagnosed with Parkinson's 12 years ago. It all began with her left pinky twitching. The progress of the disease was very slow. She has just recently (2 weeks ago) began the symptoms you mention with your father. Her caregiving team does not think it has to do with the disease, but, that she is probably in a very deep depression. The medicines that she is on are probably depleting her body of important and vital nutrients, vitamins, amino acids, protein, etc... When a person is chronically ill, their bodies become highly stressed out which in turn causes a lot of depletion in our bodies. Plus, the fact that she is not eating or drinking sufficiently enough does not help. She seems to just want to give up on life. We are praying for her mental healing. I hope this helps you and your family.


name: john mitchell
location: Berryville, VA
Email: scrapiron07@gmail.com
Date: 28 Feb 2008

Comments

Yes' there are medications that can actually eliminate that behavior without "drugging" the patient. My wife was diagnosed at age 42 with Parkinson's. She will be 77 in May. The meds kept her going for a long time, Local doctors were beyond their capability. We were able to see a team of neurologists and a neurosurgeon , and all their support staff at UVA Hospital in Charlottesville, VA. Through tests and medication Dottie's life improved and has extended, and although she was diagnosed 35 years ago, it hasn't been but the past 5 years that she could not tend her flowers, and do the yard work she so dearly loves. I have been blessed to have been with her these past 35 years. As to his irritation, refusing to eat with you. temper tantrums: It's pretty common. He's frustrated, feels he has no control over his life, and "acting out" is the way he can get attention. Remember: "I'd rather be praised than punished, but I'd rather be punished than ignored." When he gets frustrated, change the surroundings. Divert his attention from his misery to an adventure. Go outside, look thru a catalog, get a magazine about our national parks (state and local parks, too) Go there. Many are wheel chair accessible. In seeing him have a good time, you will too. It's probably the most demanding job in the world. It's exhausting to be a caregiver. But; it's satisfying too. To know you are helping a fellow human being through a very rough time. It's not for everyone, this caregiving role, but life is what happens when your plans don't work out. So; it's life, just that, and we play the cards we're dealt. It may not be the only way, but it's the cowboy way; The Code of The West.


 







 

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